Poop!

Well, the little Peanut did it...she finally made poop. If I'd only had my camera! The nurse saved the diaper to show us...we were actually very grateful!

Without going into too much detail...it was small, dark, dense...but it was enough to relieve us (and Madeleine a bit...). Her X-rays that they've been taking with the dye have shown that her system is connected, not twisted, malformed or obstructed...and some parts of her small intestine are crossing over the mid-line by her liver, even though most of it is on the other side. We want it to be evenly spread out across her belly but that liver is just taking it's half out of the middle these days!!! But it works, and is formed, and that's a good thing.

She's come down on her oxygen a bit, she's in the 60's and 70's now, down from the 80's and 90's...they're hoping to ween her down even more in the next few days to a week and get her on a conventional ventilator...and you know what that means, Kangaroo Care!!!! Touchies!!!

They're testing her bodily fluids out since her electrolytes are a bit off, and combined with other things (that I can't quite remember right now) they're making sure she's not "stressed". They're giving her hydrocortisone to assist her in that, since her body doesn't make cortisol (which you excrete to assist with stress) the hydrocortisone will supplement it until she can make it herself. We got a lot of information today...and most of it was a big relief since the past few days have been a little rough. I was afraid she was going to have to have surgery on her gut, and her oxygen kept going up...it was just a lot.

Still not out of the woods, but the trees are blooming a little...

Sleeping

Here's where the expression "sleeping like a baby" was coined. That's pretty much what Madeleine has been doing for past few days. It seems good, if she's sleeping her body has time to grow and heal...but I always wonder what the next "thing" will be. You know, it's always "quiet before the storm"?

The Peanut weighs 2 lb.s 3.9 oz now, and while some of that might be the blood and fluids that they've given her, it's visually clear that she's growing. She's filling out and after going back and looking at older pictures of her, she just looks a lot better.

She gets another X-ray on her chest and belly this morning to see if the dye they put in her stomach has moved any farther. So far, they're saying they don't really think it's obstructed, but that her system is indeed slow. Let's just pray that she doesn't get an infection from the food sitting in her system this long...the less antibiotics they have to shoot her with, the better. So far nothing bad has grown for them in their tests...let's continue down that path. Oh how I love my Peanut!

Picky Peanut

I'm starting to think that, in addition to the NICU preemie roller coaster ride, Madeleine's "performance" has a lot to do with her budding personality! Some nurses she behaves for, some she doesn't. Some can change her diaper and mess with her and her stats drop, some can do the same and her stats go up. It's very interesting.

She was behaving very well last night...I think she liked the nurses' shoes...they were black and red, looked like a Mary-Jane style. It's shades of things to come...we like the same shoes...so I'm sure one day I'll find all of MY shoes in HER closet....

They've been doing a lot of X-ray's on the Peanut the past day.
They put inert dye in her feeding tube so they can see where it goes and how quickly. So far, it's leaving her stomach, going through the small intestine...slowly...but all her small intestine is on the right side of her body. Her liver is large still from the bleeding she had 3 weeks ago at the start of life, and it seems to be crowding her intestines. Hopefully that will be something that readjusts over time. At this point, I haven't gotten the full report on the dye and we're still waiting for her to poop. Her system is really slow right now, underdeveloped.

This morning I called her nurse for an update. She said that Madeleine was sleeping and didn't mind getting her vitamin A shot...but did not like having her hands and neck cleaned off! Also, she loves to grip the tubes in her mouth and will hold onto an IV ( or my finger )...but she would NOT touch the teddy bear blanket thing. She rips her hand off of it (she knows it's made in China). The tubes have been there her whole life, the nurse said she "doesn't know they're not supposed to be there"...which is nice to think about because the tubes and wires look awfully irritating, at least they were when I had those all over me 3 weeks ago! Madeleine doesn't seem to care though. She'll probably demand a straw with every drink in the future!

Lastly, today Madeleine is 3 weeks old...and weighs 2 lbs. 3.9 oz (some of that is IV and tubing)

HAPPY BIRTHDAY PEANUT!!!

Twists and turns

Madeleine has been so stable for the past week that I wasn't really ready for the little bump in the road that happened last night. Her system started to become acidotic, I think that's how you spell it...I need a medical dictionary with me at the bedside! They thought it was a "volume" issue, so they gave her blood...that made it worse. They gave her sodium bicarbonate to treat the acid and they said it would create excess CO2 which big people just blow out of their systems by breathing more, but since they're breathing for her...they may need to increase her oxygen.

It all ended up going fine...the sodium helped her, her blood gas test came back a lot better, and so have all the ones that she's gotten since then, and they never had to crank her oxygen up. This was an issue because the increased oxygen would make her "chronic lung disease" worse. This is something that supposedly heals over time, but may leave her with asthma or the like. I think what "got me" was the nurse came to tell us the plan and looked at me and said, "I'm really sorry". That's something you say to a person when there's no hope left or things are horrible. I believe that she meant well and it was more about how it hit me. The doctor she has right now was never very concerned, or at least she was confident that Madeleine would not take a nose dive even though it's a ripple in the progress.

For some reason when people say they are SO SORRY to me...it makes matters worse...I know this isn't the greatest situation in the world (and TO the world) and ideally Madeleine would be born on time and fat and sassy and things would be fantastic! But this is what we've got, and I'm aware of what "could" happen and the worse case scenarios have been handed to me, even before she was born. She had a 50% chance at life itself...and then a 50% chance at being "normal" afterwards.

I've got a lot of hope for this little "willful child" as they call her, and I appreciate all the prayers she's receiving and hope that people keep praying. It's not over yet and we're still trudging through the forest. I just hope that no one ever says how SORRY they are again. People should only say they're sorry when they've done something wrong! It would be better to say nothing at all...

Tomorrow, Madeleine will be 3 weeks old earth time....(at 28 weeks)...please keep praying for her...

Eye see you!

"I see you staring at me...can't you see I'm trying to enjoy belly time?!!!"

Madeleine has been a good girl the past few days, yet willful as always! She would only "behave" when she was on her belly...if situated on her back or side, her oxygen would desat and they'd have to turn it way up. Finally tonight, she began to tolerate being on her back once again. If they don't flip her, she'll get a "toaster head"! Then, she'll have to wear a helmet then it will be ROUND! So we want them to flip the little pancake from side to side.

She's been tolerating her feeds really well now, no adverse reactions and they're going down just fine. Not sure WHERE it's all going...(well I know where it goes...it's just that it's not coming out yet!) She's at 2 ml every 3 hours, and there's talk of putting her up to 3 ml tomorrow...we'll see. Other than that, everything is stable and unchanged...even though I pray for quick progress...level ground is also welcome right now.


Madeleine's hair is turning out to be a very pretty shade of light golden brown...I think it's like her daddy's hair. She's got the best wrinkles too...it's just extra, she'll grow into it!

Update

Today is a good day so far...they were checking our Peanut for infection, and had already started her on antibiotics. Her cultures came back negative for infection after 48 hours so they stopped the antibiotics. Her belly is still "round" yet soft, so they upped her feeds from 1 ml every 3 hours, to 2 ml! Not a lot, but hopefully it will keep stimulating her body to work better and better. Her oxygen goes up and down, but that's "normal". They said she's borderline anemic, so she'll probably get more blood tomorrow. I'm not thrilled about all the blood she's getting, I know she needs it to live, just wish I could give it to her. They put the blood through tons of test, I just don't want her to come away from this with a disease from it.

She was just sleeping like a baby...like a good little Peanut...so I came home to work on the house. I'm cleaning and relocating items OUT of what will be her room...taking piles of beads and art supplies and finding new homes for them. I am happy that I can paint it for her now...before I felt to sick to do anything and even though I'd rather still be pregnant, this is the next best thing. She's being very well cared for and I am starting to feel ok about not sitting there staring at her isolette all day long. While she's sleeping, I need to prepare her Peanut Palace!

Peanut loves Belly Time!

A few days ago, they took Madeleine's tanning bed away and covered her isolette with blankets so it's nice and dark for her. She likes it. Now we can peek at her little face anytime we want without blinding her with light!

We're all still riding the NICU roller coaster, today was mostly ups and steady glides...her oxygen has been weened down 10% or so...which means the nitric oxide is most likely helping her.

She still LOVES to sleep on her belly...she seems to digest her feedings really well in this position. Today they fed her a little, and 3 hours later it was still in there, plus a little more which they said was stomach juices. Yum. They went ahead and fed her again...and when they turned her on her belly, an hour later, all of the food was out of her stomach. That means she gets more food! Even if they have to stop her feeds to let her digest...they're still giving her fats and vitamins through her IV...so she's always eating, just not getting the GOOD STUFF!

She got an ultrasound on her abdomen today, which we haven't gotten the results back from yet. She did NOT like this! The gel and the wand made her upset and she would desat down to 67...which also made her mommy very upset too! I just tried to tell myself it would all be fine, and kept drawing trees. After it was over, was when she got "belly time"...and of course, she was fine.

All the ladies holding and feeding their babies around me make me seriously jealous! I can't wait to get my hands on her...but I think it's going to be a long time...it feels like forever ago that I even had her, and it's only been 16 days ago!

Drawing trees

This is what I do in between staring at my Peanut...draw trees. Otherwise, I think I would go completely crazy!

Today was full of twists and turns on the NICU roller coaster ride...oxygen up and down, x-rays on her belly, cerfactin for her lungs...basically she needs to have a "stool"...and she's still not strong enough, so they give her glycerin...and she goes a little...then her lungs are still growing and they want to ween her off the oscillating ventilator and onto a regular one...but she keeps going up and down...and she likes to sleep on a certain side, but they have to flip her to keep her moving and then she doesn't breath as well on that side...uhg! That was the day...and I think my Peanut is doing better than her mom is right now!

I called the NICU at 2 am to check on Madeleine since they were checking her blood and the nurse just said "Well, we fixed her!" She said whatever they did from the time dad and I left, did her good...whether it was repositioning her, or getting her to poop a little, but her CO2 came down and her...well, I don't really understand all the stuff they check...but mainly she was doing great! I think it was that I got in there and touched the relic of St. Gerard to her foot and back right before we left...I'll be doing that again tomorrow! I'm sure once is all one needs, but it never hurts to ask for more help. Deo Gratias.

Happy Birthday!

Today is Madeleine's 2 week birthday...she's now 1 lb. 12 oz.

Madeleine!

The little peanut is doing really well today...her kidneys keep looking better and they restarted her feeding again tonight. They were giving her 2 ml every 3 hours...now they're giving her 1 ml every 6 hours! The doctor commented that she actually has good coordination for being such a tiny girl. I was concerned about her jerky movements and twitching...but the doctor said that's a good thing...she would be concerned if she WASN'T moving around a lot.

She gets to nap on her belly now, which she seems to really like. It's good for me too because I get to put my hand on her back! It's so perfect. Unfortunately, I'm allergic to the scrub soaps...they're too harsh I guess and I've got rashes and itchies from them. A small price to pay.

Did you know that you can join the "Madeleine" fan club?!
Of course, it's spelled "Madeline" without the E. So now I'm hunting down things spelled the French way...like this book on ebay. MADELEINE.